Abstract

Abstract Background Recent studies have demonstrated the importance of involving patients afflicted by a chronic disease in their own medical therapy with respect to disease control, compliance and general quality of life. Patient activation refers to patients’ independence in daily activities, involvement in the therapeutic process and having the knowledge, skills, and confidence to manage their health and health care. This study examined the association between the degree of activation of patients with inflammatory bowel disease (IBD) and its effect on health indices Methods This prospective longitudinal study included patients with Crohn’s Disease (CD) or ulcerative colitis (UC) treated at Sheba Medical Center, Israel. The patients answered questionnaires weekly during a period of 8 months using an application installed on their personal mobile phone. The questionnaires addressed clinical and emotional disease parameters, patient’s sense of disease-control (IBD-control), quality of life (short IBD quality of life questionnaire (S-IBDQ) and patient activation measure (PAM), a 4-level model of health behavior. The lowest level indicates that the patient may not believe his/her role in self-care management is important; the second level indicates that the patient lacks confidence or knowledge to take an active role; the third level indicates that the patient is beginning to be active; and the at highest level, patients actively attempt (even with difficulty) to maintain health management behaviors over time. Demographic and medical information, as well as clinical data were retrieved from the medical records. Results Among 356 IBD patients, 208 (58%) answered all questionnaire items and were included in the study 159 (76%) had CD, and 49 (24%) UC, 116 (56%) women and 92 (44%) men). Median scores of the questionnaires were as follows: PAM -63, IQR- 52.9–70.8; SIBDQ- median 44, interquartile ratio (IQR) 40–75; IBD-control 62.4, IQR- 45.7–82. 2 IBD-control mental health component- 47, IQR- 41.1–53.3). PAM was significantly correlated with questionnaires associated with overall well-being, emotional status and quality of life (SIBDQ -r=0.34 p=0.0001, IBD-control -r=0.24, p=0.004 and PROMIS-mental health component r=0.48, p<.0001). There was no significant correlation between PAM and inflammatory markers (C-reactive protein- r=0.09, fecal calprotectin - r=0.12). Conclusion Intensive weekly mobile-App based monitoring program was feasible and adhered to by most patients. PAM scores correlated significantly with their sense of disease-control and mental health scores. Hence, IBD patients’ involvement in medical therapy increases their self-management, sense of disease-control and emotional well-being.

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